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Saturday, 22 March 2014

From personal experience to a big conversation

The photograph of that car submerged under water during the recent floods on the Somerset Levels captures much of what it feels like to be diagnosed with a life threatening illness.

You are driving along on a reasonably straight road and then our life course changes. There is the shock and surprise even when you think back that the rain was heavier than usual.

Another part of your brain is wishing you had learned to swim before this happened.

It is clear that the landscape has changed and the challenge is what you do about it? Do you give up? Do you take up the challenge? Do you join others to help, support, improve or inform and influence policy and practice?

SarcomeUK - http://www.sarcoma.org.uk/voices have their Annual Conference in Birmingham today and have kindly invited me to talk and run a workshop.

One of the greatest challenges is that just as we try to cope with the changes happening to us is that everything else is changing round about us.

The NHS landscape is altering beyond all recognition. The S in NHS being described as SYSTEM more than Service. The rise, in England, of Clinical Commissioning Groups, Clinical Senates and Networks, Health and Wellbeing boards as well as Healthwatch could make us give up and remain at home.

Don't. Get out there and ask questions. Although the names and acronyms change the purposes remain the same throughout the UK.

Someone sets the overall policy - Government and NHS

Someone gathers information locally - Strategic planners

Someone holds and spends the money - Commissioners

Someone uses the money to driver the services - Providers

Someone keeps an eye on what goes on - Community Voice

Someone checks - Inspectors

By all means learn the names of the organisation but it is better to start by thinking about what happened to you and what you want to achieve?

What happened to make you want to get involved?

Is there something specific you want to change?

What might you need to know before starting?

Who could you speak with to help you in your task?

How can you plan to effect change?

We can all, individually, make a difference but one the special features of SarcomaUK is the ability to bring together a community of patients, carers, supporters, friends with researchers, clinicians, nurses and care workers.

What happened to us is important but it is not about our story. If we are to use our voices effectively it is the particular moments or events that matter. It is about whether these were in common to others or quite unique and inappropriate.

Our voice is most effective when we...

Set aside our story

Ask what needs doing

Offer to help find a solution

Achieve something together

Tell others what we have done

This is not to devalue what happened to each of us. It is to celebrate and encapsulate our experiences. People do not need to hear everything that took place to understand our commitment, do not require the chronology of events to hear our passion.

We can also bring knowledge and skills from our life experiences.

We can help translate and interpret between the science and ordinary language. We can identify parallels to help people make sense. We can ask a question that allows meaning to take place.

There are, of course, other changes that are taking place that further challenge us. Some however offer opportunities.

The NHS research landscape is changing to a more local approach. From April 2014 we will see Local Clinical Research Networks forming part of one Clinical Research Network (CRN) within the National Institute for Health Research (NIHR). This will mean that more patients will be given an opportunity to take part in research and more of the NHS being research active.

It is increasingly likely that an NHS being research active means that patients have better outcomes.

Changes are also taking place in the Welfare Landscape with reductions in funding. Rights that once were held dear are changing to duties and responsibilities. Legal Aid that once might have helped to redress an inequality has all but disappeared. The rhetoric has shifted from those like us in need to scroungers and layabouts.

The demographic landscape of an ageing population is likely to place undeliverable demand on treatment, care and services.

All of this is set against a backdrop of the economic landscape which hasn't offered any optimism.

And yet I am not depressed. I am in fact rather hopeful because today's event shows how a patient led organisation can make a huge contribution in a relatively short time.